Young Doesn't Mean Healthy or Energetic
Disability can be invisible, and it doesn't respect age groups
Getting home at the end of my shift, I struggle to make it up the stairs. I’m sure everyone in the house can hear my grunts of pain as I haul my way up, step by agonizing step.
My feet feel like someone is stabbing the soles and heel with a knife. The muscles in my calves and the tendons have tightened up, my back pulls, and my knees… my knees don’t want to bend.
Every time I put weight on a foot to lever myself up, the joints of my knees scream.
Arthritis hit me early. I’ve been coping with it since my early 20s, and honestly, even before — that was just when I was finally diagnosed. It’s the result of childhood sports injuries, damaged ligaments causing joints to grind and rock unsteadily over time.
I’m only 32. If you saw me on the street, you might think I’m a little overweight, but you wouldn’t see physical disability. Not at a glance.
Autistic people like myself can react to pain in very different ways from neurotypical people. For me, I don’t express my pain outwardly until it’s extreme.
When people find out about my arthritis, people often express surprise. Less so now that I’m in my 30s, but in my 20s it was common for people to straight up call me a liar. How could I be arthritic? I’m way too young!
That’s not how it works, man. Disability can hit at any time. I wish I was lying; this shit isn’t fun!
The fact is, invisible disabilities exist. Just because someone looks young and healthy at a glance does not mean they are, and you should never, ever assume somebody is fine.
You don’t know what’s going on with them. Don’t make an ass out of yourself by judging someone parking in a disabled spot or sitting in a seat on the bus and refusing to give it up.
For all you know, there might be a prosthetic leg hiding under that pant leg. You don’t know, so shut up. The odd stigma against disability in young people makes it harder for us to access necessary accomodations and resources from our governments, let alone basic fucking respect and dignity from the people we see around town.
If I seem cranky today, that’s because I am. I work retail. I’m on my feet all day, five days a week, and my hours just got turbocharged because of another person dropping off the schedule.
I’m going to be pulling in more money, but I’m also going to be in a lot of pain.
I swore off retail a long time ago for this exact reason; it fucking hurts. But there are no other jobs where I am. I have no choice.
And the shitty part about that is, life outside of work doesn’t stop. I still have to function, I still have to be able to do things for myself while I’m in pain.
I have to ‘suck it up, buttercup’ as one of my coworkers loves to say.
I still have to clean. I still have to cook. I still have to walk the dog. I still have to do my laundry. And somewhere in all of the necessary chores and errands and work, I have to try and find a way to relax and sleep while my body locks up and turns to burning, painful stone.
Life with serious pain sucks, man. But there’s nothing I can do but push through it. It’s just how life is for me. Nothing special, nothing new.
I’ll tell you one thing for damn sure; I’m not weak, and I’m not fucking lazy.
You try doing this all goddamn day in this much pain and call me lazy. It’s my biggest pet peeve, honestly. The people who walk in the store to see me sitting on a footstool while fixing a lower shelf, saving my knees from crouching — so many of them make some kind of crack about me sitting on the job.
Goddamn right I am. Deal with it.If I were allowed a chair behind the counter I would use it!
There’s this weird idea that people who work retail are like robots who have an easy job and can’t possibly be struggling. But we’re as human as anyone else, with bodies that have limits and need a break now and then.
This is not a polished thought experiment today, just an angry vent while I try to relax. Soft pajamas aren’t always enough of a pick-me-up, and my spoons are all over the floor. I work an opening shift in the morning, so I’m typing this up the night before, after closing.
Does anyone else encounter this kind of callous disregard around your health? Let me know; if you do, I know I’m not the only one who needs to rage.
Solidarity wins.
I relate a lot to your situation. As a relatively young person, I get exhausted immediately and it takes me a really long time to recover. Most people don't get that because I see to look okay. But the issue is that invisible disability is oftentimes not seen as debilitating even if it is.
Sam, sometimes to be quite honest I strongly dislike having to be around humans. 'What's wrong with you? - you look perfectly fine to me', was what I got during my mid 20s and 30s when a mix of my blend of autism, body dysphoria, anxiety and depression made it impossible to for me to hold down a job for any length of time. Later on when I somehow managed to make peace with myself well enough to study to become a social worker it was ME/CFS that struck me down and finally forced me to take early retirement. My doctor telling me that the job I loved was killing me made for a fairly convincing arguement to make me stop. As for pain Sam, due to ME/CFS I was living with what medical folk call 'Non specific pain', - which means that they don't know what's causing it, but they've got a name for it which makes them feel better about it. And once again I got the 'You look fine to me' comments when people discovered I was on an invalid's benefit. And I got so much daft well meaning advice on how I could cure myself that I didn't want. When type 1 narcolepsy which had been hiding away behind my ME/CFS symptoms finally broke out in full force I got even more unwanted daft advice, gifts of useless 'cure yourself' books and occasionally called 'lazy' by members of my own family I have small regard for. At least now that I'm firmly in OAP territory I get left alone because people expect old folk to be a bit creaky around the edges. My heart goes out to you Sam, and I can only hope that your situation will improve.